[Paula H]

Hi folks,

New to this forum. PD for six years. Left side is my PD side. DBS a year ago. Rytary for the last year or year-and-a-half 95 mg dose; three hours apart and still have off symptoms – downward toe curling in my right foot and upward toe curling in my left foot along with pins and needles.

While watching TV at night in a recliner, left quad muscles start contracting (involuntarily, I think), then I can induce a voluntary response to make them relax; but it doesn’t last. Next cycle starts immediately.

Then when I go to bed, as soon as I get horizontal, RLS takes over in about ten minutes. The RLS could be mild or intense. When I can’t stand it anymore, I swing my legs over the edge of the bed or get up and the RLS stops immediately. Unfortunately, that involves trips to the kitchen and some weight gain.

I take 2 g of Pramipexole before bed for the RLS, but that’s not keeping it at bay. The toe curling has been creeping back in so I increased my overnight dose of Sinemet 50/200 ER to a whole tablet and if needed, a half tablet around four in the morning.

Later in the night, the RLS creeps up into the gut – R-Gut-S for a name. Getting some relief from that with Probiotics. Gut position is not constant, can be different locations. Also, a one ounce swig of apple cider vinegar with another once of water for a chaser (the theory-more acid to aid in digestion).

Other useful hints that may or may not work. Laying on the hard floor. Hot shower, hand held shower adjusted to two strong jets on the quad muscles and the back of the neck to sooth the spinal column. Sitting at the kitchen table with a small pillow for your head, kitchen towel for the drool. While in bed trying to sleep, try lying on your back.

As for akathisia, I find that minimizing eating before bedtime helps (2-3 hours). I know this is a forum for akathisia, but reading these accounts reminded me of my sleep deprivation issues. Thanks for listening.

John *

[Paula H]

Yes, I have heard very good things about Dr. Mischley.  I know someone that has worked with Dr. Mischley and it has helped their PD.   I have also heard her talk on a virtual during COVID.  She really knows her stuff